Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

Sorry, just to add that I don't think it's as easy as this sounds, and it doesn't work for everyone. Inpatient care can help to turn the corner

Thank you @Girliefriendlikespuppies and @greydoor - everything you say makes a lot of sense. The problem is that she will eat her 3 meals and 3 snacks, just ones which she has chosen. The only exception being dinner, she will generally eat what we are all having. She's come a long way from 6 weeks ago.

Since we've tried to introduce extra, including a hot meal at lunch as well, she's shut down and is eating even less. She's gone to bed having not eaten since lunchtime.

It's the loss of control which she seems to be finding the hardest. She felt like she was starting to get better by going to school and choosing some of her foods, now she feels that everything has been taken away from her. We're not sure if Asd may be a factor, it isn't really something we'd considered until now but I wonder if her sense of losing all control is going to hinder her recovery.

We're not sure whether it would be better to keep going with the regular eating and letting her have some control, or to continue with fully managing her food and risking her not eating at all. I know that the longer the weight restoration takes, the harder it is for recovery. Am just so terrified of her ending up in hospital again as we can't make her eat. It all feels a bit bleak right now 😢

@IcySloth
My dd has not been eating well the past couple of weeks. I spoke to an ED nurse at CAMHS on Friday. She said for dd food is food and most important thing is to get 3 meals 3 snacks back on track right now and stable, to be worrying about the finer details when things are more settled. I would call the service for advice tbh as advice may be different depending on presentation and my dd does not present as typical anorexic. Also have a look into Jenny Langley. She’s great, very experienced and had a ds, who is long since recovered from anorexia. She has been working in the ED field ever since and talks a lot about micro steps for those, who cannot deal with changing things all in one go.

@SimSam
Dd was eating about 400/500 calories and only after 8pm. We got dd onto 3 meals 3 snacks in stages by getting her to want to do things more than to be on bed rest. I was in charge of prepping dds food and as she was eating the same thing every day and firstly I very slowly upped the quantities in a way that she didn’t notice until she was eating 600/700 calories for the one meal. She is 16, 15 when this started and she would just bolt out of the house, try to jump out of her upstairs window and get violent, refuse to eat at all when we tried to do it all at once.

Your dd at 500 calories a day won’t be able to reason with you and may have no concept that she is even ill. My dd definitely doesn’t. Your dd’s brain is being starved and is shrinking. It takes 500 calories just to feed the brain feeding her coretex isn’t a priority. She will therefore be very animalistic and lashing out like a wounded animal, which accounts for the nastiness.

I’ve also had it all. I am the one feeding dd so I am the target. She has been absolutely vile, told me several times she wished me dead. Told me she can’t wait until she’s 18 as she won’t have to see me anymore, been violent, threatened violence. It’s the ED taking over her brain. As her brain gets fed more, the love is returning albeit she turns on a ha’penny if I threaten the ED in any way, which is really, really hard to deal with.

My dd doesn’t know why she does it. I called CAMHS in despair last Friday as things haven’t been going well... I spoke to a great ED nurse, who said my dd is acting like a bad friend, who has no idea why they’re treating you badly. They just are doing it. And it is exactly that: dd has just been treated extremely badly and sent vile messages by a now ex friend telling her awful things including to stop eating as she’s putting on weight. They have been friends since age 4 and I can so totally relate to this right now as the girl has no concept as to why she’s treating dd badly. Otoh I understand exactly why she is saying the stuff, it’s all about her not dd. The same can be said about dd and the ED and it was actually such a relief to understand.

We wouldn’t have been able to do this alone btw. We are paying an ED coach, who is advising us… mainly me, as dh is a bit behind with it all, on what to do.

@Mummyoflittledragon thanks for sharing it sounds like you've experienced a tough time and I'd just like to say well done for getting through the days... you've achieved so much and I'm sure you'll move forward again soon.

I'm going to push for inpatient. Until now I haven't managed to help her eat and I don't think I'm able to make these first steps at home with her....

I feel guilty for not being unable to help - during her 3 yrs of problems my dh has said many times that he believes we failed as parents. We did not stop these problems from happening and we have not helped her fix them. It was our responsibility to prevent these problems and we did not. I don't believe I failed. But I do feel the guilt.

Icy your dd doesn't want control, she actually feels completely out of control. The ED wants control and will punish her if she makes the wrong decision.

It is absolutely a kindness to take that co trip away from them.

Even though my dd screamed, shouted, self harmed, banged her head on the wall I could still sense her relief that I was in control not the ED.

You could build up so she has the choice of two breakfasts so you say either it's porridge or scrambled eggs on toast (both can be made up to easily 800 cals.)

Snack is either a piece of cake or an energy bar.

If sugar is her fear food I think you have to face it head on and go through the pain barrier of being her to eat it.

Ideally though you say this is what you're having, put it in front of her, give reassurance and distractions.

Do not get afraid to go back to hospital- that is what will happen if she doesn't eat and you have to be crystal clear about that.

As parents we do have a lot more power than we think we do. You have been getting your kids to do things they don't want to do all of their lives from brushing teeth to going to school!

You absolutely can make them eat.

Thanks. It really isn’t your fault, you know. I understand the feelings. However, no one can give their child a mental illness.

@Mummyoflittledragon thank you for the Jenny Langley recommendation, her online courses look really relevant. Sorry to hear that it is an ongoing struggle with your dd. It feels awful when you are the one on the receiving end of all the hate and anger.
Dd is barely speaking to me today and everything I say makes her angry. She says all I talk about is food and then she refused her snack simply because I mentioned it. She told me that she would have gone to get it herself had I not brought it up.
Dh sat with her at dinner and she was totally normal with him, laughing and chatting.
We have clinic tomorrow and she's said she doesn't want me there. I know it is the eating disorder speaking but it feels really hard being the object of all the hate.

@Girliefriendlikespuppies Thank you, I know we need to make her eat somehow but the more we push, the more angry she gets and then she totally refuses to eat anything. Hoping for a miracle to happen at her clinic appointment tomorrow to reset things a bit. At the moment it isn't looking likely that she will be able to go back to school next week which was really helping her state of mind. Hoping that school will be a motivator to start properly increasing her intake.

@IcySloth
Oh bless you. I know that exactly. As your dh is seen as ‘good’, it would be really productive to get more involved to show a united front. It squashes the ED out.

I find texting dd more productive. Eg At school something along the lines of ‘Hi sweetie, I hope you’re ok. Please remember to eat lunch. You need the energy to learn and have fun at school. I love you so much xxx’. Also getting my dh to do the donkey work even though I have to prompt him and send him the text I want him to bounce onto dd.

Every time dd doesn’t eat at home I check to make sure she’s bought food. If not, I will collect her. When things were really bad I also got dh to ask her if she’d managed to eat her lunch and what she ate… even though I knew she’d bought food. This was the best way to gauge how much of the food had actually been eaten.

If your dd managed to go to school, can they monitor what your dd is eating or sit with her? This is presuming she isn’t a purge risk. Will your dd be allowed her phone as a reasonable adjustment if you explain that texting is seen as a more neutral way of communicating with her?

My dd had her phone on her and it really works so much better. I think it’s hearing my voice that is triggering whereas a text delivered with a lot of care and love breaks through. I am now reflecting on what I have written, I’m going to use texting even more. Even when we are both in the house together etc.

I hope you manage to get on a course with Jenny soon. She’s fab.

Hi all, I need to learn more about dealing with my dd not eating quickly.

She's in a bad place and I need to help but I don't have knowledge or skills. So does anyone have book recommendations or websites that they have found helpful? I don't have much time between trying to care for her and keeping the other kids in school so I need to focus my time wisely.

Internet searches have led me to lots of stuff but not all helpful
Thanks for any ideas

BEAT and FEAST are both good charities that support carers with ED.

Eva Musby has various online information videos.

If you are worried about your dd and she is eating 500 cals and less a day you need to take her to a&e. Do not be fobbed off, explain you are worried she will die unless they do something. Push for admission.

There are a few fb groups but these vary in how helpful they are. Some are very pro FBT to the point of being militant about it. Others very anti FBT.

Icy my dd hated me with pure hatred at the beginning when I was taking control, she wished I was dead and really meant it.

It's just dd and I so I was completely alone with this black hole where my lovely dd used to be 😥 it was the worst time of my life.

I think the pps comment that if you're going to go through hell go fast really resonates and that was the approach I took.

I am bloody stubborn when I want to be so once I knew that calories and fats would be the best hope of getting my dd back I went at it full pelt. Everything dd ate or drank was based around whether double cream could go into it!!

Your dd should be no where near the kitchen and you have to make the decisions. Don't talk to her or ask her just at snack time get the snack and put it in front of her. Ignore any protests and stay impassive, once it's eaten, move on.

It definitely sounds like your dd has too much control and this will only create more stress and prolong recovery.

Anecdotally on this thread the parents that have had the best success have been the ones that stuck to the FBT rules and added as many calories as possible to everything their child ate.

It does work but it is hell.

Fwiw my dd became ill at 14 (during the first lockdown) and we had a hideous 18 months. Once we got into a pattern of her eating with less resistance and the weight started to go back on dd turned a corner.

She's now 18 and did well with both GCSEs and getting an advanced diploma at college. There are still a few behaviours that linger but I keep an eye and overall she eats well, maintains a healthy weight and is living a life.

Our relationship has recovered and we remain close, she tells me everything these days (whether I want to hear it or not 🙈😂)

For dd recovery was about regaining the weight she needed to start feeling better and for the anxiety to reduce. She never had any therapy as refused to engage, I also think dd is autistic (lots of signs since she was a baby).

I was thinking about the question 'how do you make them eat' today, and I realised that it's sort of about how the rest of life goes on around it. When you're in the really intense phase where you are getting the weight back on them, for us literally everything in our life was focussed on this. So it wasn't like normal mealtimes or activities were going on as normal and our dd was eating what we asked during mealtimes, life was pretty much consumed with it. Meals could take a long time and be full of screaming, attempts to escape the room, and trying to discard food. In between meals and snacks we were all sort of reeling from how awful it all was. My daughter HATED me in particular, her facial expressions and her voice was just awful - she meant it at the time. I feel quite traumatised by it now - it's really awful to hear a 12 year old swearing like a docker. Once I audio recorded my dd in the middle of an outburst because I felt like I was just being a rubbish mother not to be able to cope with it, and when I listen back to that recording it brings the true awfulness back. Nobody else knows I've got that recording, and I won't ever play it for anyone else, but it really helps me remember the reality - it was like she was possessed at that time.

Making them eat is a lot of work, and it takes its toll on you as a person and on the whole family. But healing the brain is the only way you can get to a point where you can work on anything else that's still causing problems - we have realised my dd is highly anxious, and a prolific masker. We are only now able to start working on those. Anorexia was so 'good' for her as it enabled her to push down all of those feelings - it fulfilled an important function for her, making it doubly hard for her to let it go.

I read that brain recovery takes at least a year from the point they are weight restored. That means we are not yet there with brain recovery, and you can see it sometimes in how she manages school or other complex things.

Nobody gets this stuff if they haven't supported someone with recovering from an ed. It's so hard for the whole family

@Mummyoflittledragon her school have said that they don't have the resource to have someone monitor her at lunchtime. They've said they can allow her offsite to meet me and have her lunch in the car, but she absolutely hates that idea. She says she finds it much easier to eat with her friends in a 'normal' environment, where she feels more relaxed. One of her friends has gone through similar struggles with eating and is supporting her to eat.

Texting is a good idea, she isn't allowed her phone at school but they may make an exception for her. I think my voice angers her as well!

I hope your dd is managing to eat a bit more, sorry to hear things have gone a bit backwards. At what point did you let her go back to school? My dd finds school such a welcome relief and feels staying at home will make things worse. We are thinking of keeping her off next week to try to focus on feeding, but that isn't going to be too well received.

@Girliefriendlikespuppies it sounds like you've had a hellish journey with your dd. You've had such strength. I'm glad to hear that she has come out the other side and that your relationship has recovered. It gives me a bit of hope!

I know that dd has too much control. We are walking such a tightrope with her- the more we push, the less she eats. If she has some choices, then she will eat. But it's not enough.

Clinic this afternoon was as we expected, she hasn't gained any weight. That's nothing in 6 weeks since hospital discharge. The clinician was quite frank with her and told her she needs to double the quantity she is eating, otherwise they have the power to stop her going to school due to health concerns. They also indirectly mentioned inpatient treatment if things don't improve. They've also said that they can refer her to a psychiatrist if we want to, has anyone had experience of this?

@SimSam I really hope that you can get some help for your dd. We self referred to the ED clinic and were seen really quickly as dd was eating less than 500 calories. Eva Musby's book has been really helpful so far, as well as the Plate by Plate Approach book.

@greydoor I can really relate to what you're saying. It does become all consuming, and I feel like dd sees me as the enemy. It is like she's been possessed at times. Everyone is on edge and there's a horrible atmosphere. Trying to keep some normality for her younger siblings but they are picking up on it too.

I'm not handling things too well, I really need to develop a thicker skin and not take it all so personally. Feeling so battered and bruised from the last few days and need to put my hard hat on and find some strength and resolve to fight this thing. She looks so lost and unhappy and she is so far away from her normal self. I think the anorexia is also a coping mechanism for far more deeply rooted things that she's dealing with but won't open up to anyone about.

Thank you all, it is really helpful to talk to people who understand what we're going through x

Icy definitely take them up on the psychiatrist offer, that might get your dd meds which can kick start the eating. Olanzipine is the one that seems to help the most.

I think you're enabling the ED by not taking control and also not going into school to monitor lunches. Don't be afraid of her kicking off, avoiding that conflict just gives the ED more power.

Distress tolerance is a really important skill to learn. You are going to cause your dd distress it's impossible to avoid it so learning coping mechanisms for yourself is key.

It's good the ED team are being frank that backs you up. No more yogurt and apples, we decide what you eat and there's no debating it.

@IcySloth
My dd was going to school all of last year. Looking back she developed anorexia last September as her intake reduced during that time after she started skipping lunch at school and subsequently went veggie. The only time she had time off was when she ate a total of about 1200 calories in 13 days. Then she had 2.5 weeks off at Easter and her friends got her eating enough to put on 1kg during that 2.5 weeks... she uses not eating to punish me so I couldn’t get her to eat.

Things then deteriorated when she went back to school, however, she was sitting her GCSEs and went on study leave as soon as a exams started, which was a couple of weeks later. So only in for the exams and I was living day to day not knowing if she’d be well enough to sit them with her totally oblivious to the fact she was (is) mentally unwell. She’s now back at school, still oblivious to what all the fuss is about and eating well enough to attend full time.

She has also restarted dancing albeit fewer classes than before as I don’t think she’s eating enough to attend them all. She didn’t go last week for example as she wasn’t feeling well and she wouldn’t have been allowed anyway on the reduced intake. Hopefully she can go tomorrow as her stomach seems to be settling and she’s eating as she was before apart from the odd blip now. Thanks for asking.

As for the psychiatrist, I would take any help you are offered if your dd will agree to attend. Bless her. She will look lost if she’s eating so little. Please remember this isn’t personal. She loves you and if she could really understand what is going on, she wouldn’t be treating you like this. It isn’t her.

Hey @IcySloth sorry to hear the appointment didn't show any weight gain. I agree with girlie in what she is saying about allowing the ED to continue. Coincidentally this came up for me on a Facebook post today and I think it really illustrates this https://www.nationaleatingdisorders.org/you-have-see-eating-disorder-beast-slay-beast/?fbclid=IwZXh0bgNhZW0CMTEAAR01kgSWicZci5KbXYja5GmmBqdQ2yWbyGZxm0oF-9ikIAKUV2nptPCv7q4aemm_6QB6ksIjV9O19XMIfJuPxQ

Grey that blog is perfect, conflict is good, peace is bad!! Exactly if your child isn't screaming they hate you you are not doing enough to push the ED out of your child.

If any of you are Stranger Things fans it's not unlike Joyce having to get the shadow monster out of Will. You have to make the host so inhospitable the ED has no wriggle room and will finally just fuck off!

Obviously it helps that as the food goes in the brain (which can shrink and lose a significant amount of matter when starved) also starts to recover.

@greydoor thanks for sharing - it was sadly reassuring to hear that you also experienced your dd being almost "possessed" - with mine when food is offered she's so mean in an aggressive way that is unbelievable for a 16yr old.

For her AN is def a vehicle to control her anxiety...I'm desperate to get her on some medication to help us get some food into her regularly so we can take first steps...

Thanks to everyone for sharing. Right now I feel like your hope is keeping me going.

So, I’ve kept myself off the thread for a while as my MH took a nosedive. Hi to everyone, sorry it looks like there are some new people here. DD has been discharged from CAMHs, as we weren’t getting anywhere with services we’ve let her live a normal life, in school full time + PE and hanging out with friends after school etc because she was maintaining about 83% which everyone said was fine because she is not hitting criteria for diagnosis.

Today she needed me to pin the side of her waistband as her jeans were falling down, so I’ve checked and we’re back to 79%.

We’ve been discharged three times now, is it even worth going back to the GP?

@Glitterfarti ah, sorry things are going downhill again. 79% is low. would be bed rest and no school where I am. Are you getting any type of support. I would definitely go back to GP. I cannot remember if you were under Camhs. Is she restricting heavily at the moment?

We are coping so far. DD still feels suicidal so the 24/7 supervision carries on. Was really hard in the school holidays. I am pretty much 24/7 with her. She is starting her placement at the PRU next week. Hopefully this will be a help her to crawl out of her hole. No idea about weight as she is either refusing the weight check or rocks up in a ton of layers of clothes so that the reading is pointless.

I wanted to ask about fear of choking. Every meal takes ages now as she says she is scared of choking and she chews and chews. Is this an AN thing??

@Glitterfarti
My dd was discharged from CAMHS. I was so infuriated at the way it was done because the psychiatrist told her she doesn’t have an eating disorder that I raised a PALS complaint. I was very scathing of the psychiatrist. I called them last friday in despair and spoke to a brilliant nurse, who gave me some really good tips for dealing with dd. She told me that dd could be fast tracked back into the service directly within 6 months of discharge if they believed there was a need. I would therefore call both your GP and CAMHS directly and ask for assistance.

As for the lack of diagnosis. It looks as though services won’t diagnose unless our loved ones fit neatly into a little tick box. We are paying a private ED coach and she explained that as dd is likely autistic and is showing high PDA traits as well as both symptoms of ARFID and anorexia she is atypical anorexic. Dd doesn’t have typical fear foods. She eats a larger range of foods when relaxed and a smaller range when not. A year ago when her anxiety was extremely high, it appears she tipped into anorexia and here we are. Dd also has no awareness that’s she’s unwell and emaciated albeit she eats, not an ideal diet, in order to do the things she wants to do.

Idk if this is useful for you at all. I think from what @WoodenTrain has said, his autism and PDA presentation is preventing him from being diagnosed. I think this is an absolute outrage and our children are being failed.

At 79% my dd would be extremely unwell. She only got down to about 84% and was on bed rest by this stage but she is very sporty so a lot is muscle. I don’t have as much experience on this board as many but I also think your dd should be on bed rest. That is very low. And if she is allowed to continue as she is, she and the eating disorder are being given the idea that it’s ok to do all that stuff she’s doing, losing weight, after all the professionals have told her everything is fine. This will lead to more restrictive behaviours.

I am making a note of everything dd eats to ensure her intake is enough. This is hard at 16 as there is a lot of push back. The ARFID tendencies help though as she gets comfort and safety in eating pretty much the same thing every day. This does means though that she isn’t getting all the high fat dairy etc that is recommended. The ED coach has said her anxiety needs to be dealt with first.

@Curlyhairedassasin
Good luck for your dd. You must be absolutely exhausted. I know a school nurse working at a private school and she said that some girls can take out to an hour to eat half a sandwich. She sits with them whilst they eat. Idk much about the fear of choking. I know it can be linked to ARFID and textures. As anorexia is an anxiety based disorder, your dd will have heightened awareness and may feel anxious about certain textures, food colours and so forth.

@Mummyoflittledragon loads of anxiety here but we have been dealing with AN for a good 2 years. The fear of choking is very new. Defo no ARFID like stuff going on. Hence I wondered if it's something which can be part of AN.

I imagine it's linked to the anorexia and probably a sign the brain is not coping/very malnourished 😕 dd went through a phase of holding food/drink in her mouth and not swallowing. She also used to spit which was gross, I'd find little cups of spit everywhere. Ime if you think it's an anorexic behaviour it is an anorexic behaviour.

Hi glitterfarti I'm sorry to hear things have been so tough, your dd sounds really unwell so I would take her back to the GP and her physical checks done. How much is she actually eating at the moment? If less than 500 cals go straight to a&e.

I would keep pushing for an ED diagnosis and every time/if they discharge complain via PALs and write to your MP.

It's absolutely shocking how much you have to fight for basic provision of care. It's negligent and ultimately your dds life is on the line.